On December 3, 2014, a historic vote took place. It was eight years in the making.
Yesterday, the House of Representative voted overwhelmingly to pass the Achieving a Better Life Experience Act of 2014, also known as the ABLE Act. Impressively, it had 380 co-sponsors with wide support by both parties.
The ultimate vote was more than a landslide victory: 404-17, with 13 Members not voting. I was proud to see that every member of my home state’s delegation voted in favor of its passage. (If you’d like to see how your Congressman voted, click here).
The ABLE Act has been a labor of love for a lot of advocates, but it started as an idea by a fellow father, Steve Beck. Beck has a daughter with Down syndrome.
Under existing law, individuals who qualify for SSI disability and Medicaid cannot hold more than $2,000 in assets in their own name. This creates forced poverty. Adults with Down syndrome, and other disabilities, must choose to work less, or be paid less, or not work at all so that they maintain the social support services they depend on for providing the basics. It’s a system that enforces disability on the disabled.
Beck wanted to try to fix this in some measure.
Kids with just 46 chromosomes can receive tax advantages through college savings accounts to help them live independently. Beck thought something similar for individuals with disabilities should be acceptable to most policy-makers. While it took some time, it turns out he was right.
The ABLE Act allows a savings account for specific purposes–education, transportation, housing, and other services–to be established to benefit individuals with disabilities, like Beck’s daughter, and my own.
In 2009, I served on the planning committee for the Down Syndrome Affiliates in Action conference that would convene in Washington D.C. Being a lawyer and interested in public policy, I was on the working committee to establish our legislative priorities. It was through this process that I got to know Steve and many other committed advocates. That year, we visited Capitol Hill to ask our representatives to sign on as co-sponsors. Then, in 2012, we were back as part of the National Down Syndrome Society’s Buddy Walk on Washington, to make the same request, led by Sara Hart Weir (newly announced interim NDSS President) and former Board President (and fellow father to a daughter with Down syndrome) Chip Gerhardt. And, this year, we convened on Capitol Hill again.
The persistence paid off.
These parents, like my friend Jawanda Mast, showed the same persistence in grass roots advocacy to pass the ABLE Act as they showed in fighting for their children through years of therapy, IEP meetings, and inclusive community opportunities.
And, so, yesterday, the House of Representatives–a House that has passed virtually no major pieces of legislation that had the hope of being signed into law–passed by a huge, bipartisan vote the ABLE Act. It will now go to the Senate, where the Act has 74 co-sponsors. Hopefully it will also get called for a vote, pass by an equally large margin, and head for signature by President Obama into law.
Being a piece of public policy, it is hardly perfect. The law has received criticism for having an age cut-off of only allowing those diagnosed with their condition by age 26 to be eligible for establishing the savings accounts. Rep. Wasserman-Schultz (D-FL), co-sponsor of the bill and chair of the Democratic Party, voted against the bill because it paid for its cost in part with cuts to Medicare (cuts which included a snicker inducing, double entendre-laden report on cuts to payments for penis pumps). And the conservative Heritage Foundation came out against the bill for removing means-testing to qualify.
But this is the nature of compromise: nobody gets everything they would like.
The ABLE Act though is much more than just getting a half-a-loaf instead of a full loaf. Indeed, it is one of the most significant expansions of social support policy for the disabled passed in a generation.
For purposes of this blog, this is key because one of the main reasons mothers cite for why they terminated their pregnancy after a prenatal diagnosis is out of a concern for their ability to care and support their child. The ABLE Act will lighten that concern. Now, like their other children, parents can put away funds to help provide for a more independent, better-supported life for their child with Down syndrome.
Yes, the very nature of establishing a savings account means the child will have parents with means to put away for savings. So, those that are less fortunate economically will likely not experience a change because of the Act’s passage. But, for most families, it will be a positive change.
There is no perfect law. But this law does right an inequality of treatment. Now instead of my son only having a college savings account, should Sen. Reid call the Act for a vote and no senator threaten a filibuster, then upon its passage, so too will my daughter. And many others like her. Including Beck’s, and Gerhardt’s, and Mast’s.
In this time of Thanksgiving, I hope you will e-mail or call your Congressman and express your thanks for their support of the ABLE Act. A simple note of appreciation may provide the support for future legislation to benefit those with disabilities to happen, and to happen quicker than eight years.
My friend Mark Leach, great an article. What an honor to work alongside you in efforts to level the playing field! Took a village!